Nan is on End of Life Care - Need a hand hold.

[Jingle23]

I’m really struggling tonight and could do with some perspective from people who’ve been here.

My nan is on end of life care in a care home. We’ve been with her all day — she’s comfortable, drowsy but peaceful, and being looked after kindly. The staff have reassured us she’s settled and not distressed.

We’re a very close family — my nan, my mum, me and my 11-year-old DS — so this feels especially hard. Being apart from her, even overnight, feels wrong in a way I can’t quite explain.

The care home doesn’t have any facilities for relatives to stay overnight. There’s no bed or recliner, just chairs by her bedside that are basically wooden with a thin cushion on the seat and back, so staying all night really isn’t feasible.

On top of this, my mum is blind and relies on me to help her. She’s 70 and not in the best health herself, so I also need to make sure she’s safe and comfortable. That adds another layer of guilt — feeling like I’m letting someone down whichever choice I make.

Tonight we’ve come home to rest and I feel awful. Deep guilt, anxiety, that horrible knot in my stomach. What if she passes while we’re not there? What if she’s scared or needs us? I keep thinking I should be there holding her hand, but I also know I’m exhausted and running on fumes.

People keep telling me it’s okay to go home, that she wouldn’t want us to make ourselves ill, that the staff will call if anything changes. Rationally I know that. Emotionally I feel like I’m abandoning her.

Has anyone else gone home at night while a loved one was dying? How did you cope with the guilt and the waiting? Did you regret not staying, or did you find you needed that rest to get through the days?

I just feel heartbroken and torn in two. Any gentle words or shared experiences would really help right now.

It’s a really tough time. My elderly mum was in her last days at her care home back in February. They obviously didn’t know for certain when the end would come but it took days longer than expected. We could have stayed overnight on the chair by her bed (a comfy chair) and the night before she passed I stayed until about 10pm. Care homes should have a policy on end of life care which usually includes provision for allowing relatives to stay by the bedside day or night. I went home each evening as, like you say, you’re running on empty. I got the call about 7.50am to say she had passed. So I wasn’t there, it was heartbreaking but I don’t feel guilty as such, just sad about it all. I can’t tell you what’s right or wrong, is your nan unresponsive? My mum was unconscious in the days leading up to her passing, so it was just a matter of time. Do what you need to do, some people seem to wait to be alone to pass away, I don’t think we know everything there is to know about dying. Your nan sounds like a remarkable and clearly well loved lady.

Your nan is loved. She is being cared for. It’s so hard.

I have mixed experiences of caring for parents at end of life.

I now say take care of yourself in among it all

Thank you! I should have put that it’s not really a care home as such. It’s more like a community hospital/respite care facility. So not really set up for family’s to stay over. She is so fragile I don’t think moving her would be of any benefit at this point.
Nan is also 96 so she has done remarkably well!

This could be a long road and your nan who cared for you would want you to look after your mum and yourself.
Is she talking / eating and drinking still? These things suggest she is days away.
Does she respond to your voice / open her eyes ? Or is she unconscious but settled ? This might mean that the end is sooner.

Some times it is unpredictable but might help you estimate if it is the last days or days away still.

tough times… big hug xx

She sounds a special lady xx

I know how you feel. My Dad died 50 years ago when I was 20. He died alone because my mum would not allow me or my older brother to be at the hospital.
I think that you probably did everything thing you could for you Nan while she was alive. I am sure that if she could she would say that she would want you to make a priority of your mum, your son and yourself. Take comfort in the great gift that she gave you while she lived and how grateful she would have been for such a wonderful grand daughter. In time you will learn to bear with her loss and I hope you take comfort in a life well lived.

She is still taking small sips of water. She is nodding her head slightly when asked something. She also asks for a drink and asked me what time it was.

Thank you for your kind words. She is a very special lady.

Thinking of you OP. I know you’re in a dilemma but you need to look after yourself and your Nan would want that. Your Mum is also her baby and no matter how old we get, we all just want to make sure our babies are ok. So she would want you to be helping your Mum, given her condition. Your DS also needs his Mum.

sending you love and strength x

My DF was in a hospice on end of life care, we could have stayed 24/7 if we wanted to, there was a self contained flat we could have stayed in and a pull out bed in Dads room. My DB has learning difficulties and was already struggling to come to terms with what was happening. Myself, DM and DB went home for rest on an evening. I felt incredible guilt for not staying with him but I also knew he'd have been worried that we weren't resting and looking after ourselves. As it turned out my DM decided to stay one evening, she had literally just left to come home to shower and we got the call to say DF had passed.

Dont beat yourself up about it, I know it is difficult but you are being there for your loved one and you do need rest.

It’s so difficult to know how much time there is left. As your nan has some level of consciousness it could be a while yet. My mum was also 96 - it’s a great age but makes it no easier, it just leaves you feeling so sad. I’d go home and in the event she deteriorates, hopefully they will call you, the staff are usually quite skilled at knowing when it is imminent (didn’t really happen in our case as mum was unconscious for days so nothing really changed at the end). Look after yourself too.

It’s such a sad time. ive lost my grandparents and dad.

don’t worry about not being there when she passes. sometimes they wait and go when they are alone. it’s like they know it’ll be less upsetting for us!

sometimes their face lights up as though they see someone they recognise before they go. or they rally and seem fine just prior. just mentioning so you won’t be surprised if these happen. but mostly we just go to sleep and pass peacefully. 💐

It's such a hard time for anyone but especially in a position like yours with a dearly loved family member.

When my dad was dying DH and I stayed with him overnight but the next day DH needed to go to work and I had 3 school age DC and my disabled DM to care for so we went home. I am sure Dad was somehow aware of us being with him and waited for us to leave before he died. He wouldn't have wanted me to be distressed and maybe your nan feels the same.

How are you doing @Jingle23 ?

Often people at the end wait until they’re alone to let go, my MIL did, so please don’t worry about going home at night.

Thank you everyone. Nans hanging on. She’s asleep most of the time. She asks for a drink sometimes but her speech is very weak. We’ve been staying until midnight then going home for some sleep and coming back in the morning. She’s very comfortable and very well cared for. They have given us some comfier chairs but they still aren’t brilliant for sleeping in.

Nan passed away with unconditional love. What she’s always given and what she’s always had a week ago today. Thank you so much for your comments. I just needed a hand hold. It was the toughest thing I’ve ever done but I’m so glad I was there. Just like she’s been there for me my whole 35 years on this earth! Thank you all so much. Xx

I’m so sorry to hear your sad news. Sending you big hugs. How lucky both of you were to have each other

I am so sorry. My thoughts are with you all.

Your dear Nan passed knowing how loved she was. Thinking of you.